Congregants of Etz Chaim, Thank you for inviting me here today. I consider this a special honor to be here among you. It is especially fitting that my time with you falls within the celebration of Hanukkah because, while Hanukkah means many things, it has also come to be a holiday of gift giving.
And I am here to discuss a very special gift.
I want each of you to think back to a time when you received a very special gift. Maybe you were a child and a loved one knew just the toy you wanted. Maybe you were older but you were blown away by the givers knowledge of the very thing you wanted, the very thing that you desired and held meaning especially for you.
Receiving such a gift is simply magnificent. Opening a wish granted is purely magical.
My challenge this holiday season, for my tween age and teenage sons, is finding anything that is really meaningful for them. More and more materialism has become the hallmark of this season and yet, across religions, the purpose of the gifts in remembrance of the message of the holiday can become lost.
What if I told you, in this box, I have a gift of immeasurable worth? A gift that will provide relief, satisfaction and deeply affirm love. And at the risk of sounding like a QVC hand model offering a special on which you MUST ACT NOW, what if I told you this gift, this amazing gift, was free?
Have I got your attention?
Ladies and gentlemen, before I continue, let me introduce myself. My name is Jenny Buckley and I am a nurse with Weinstein Hospice. Weinstein Hospice is the Atlanta hospice started by and supported by the Jewish community. I’ve had the privilege to work for Weinstein for the last ten years -I have worked in hospice and palliative care for 18 years.
Many of you who were interested in my gift story may now be less interested. Hospice can be a dirty word- we all associate it with death and we run from that. Thinking about end of life care, especially at this special time of year seems… unpleasant. Awful. Ill timed. Off message.
I get it. I often say when I show up at someone’s home to discuss hospice care it isn’t their best day, to be sure. Most people don’t want to see me coming. And yet, I can’t begin to describe how much I love what I do.
If you would, indulge me for a moment in a personal story. When I was 13 years old, I was diagnosed with cancer. My treatment included two important phases: surgery and radiation. As an adolescent, I endured an extensive surgery. My recovery during that period was remarkable in the incredible, competent and loving care I received from the nursing staff. Because of their support, I went into the radiation phase unafraid. Unfortunately, the nursing staff during that phase was cold, incompetent, inattentive, and – looking for an adjective— lousy.
Without making this about me, I share that because what I learned in that time is CARE is as important as CURE. Supporting family, in addition to patient, is essential. This mission drove me into hospice and maintains my passion 18 years later.
So while hospice may seem repulsive to many of you, I don’t find that to be the case. Often, I am approached by people who say, “hospice workers are angels” and of course, I AGREE! (LOL)
There are times, however, when my job is awful. I’ve been with patients and families enduring dire circumstances and in the worst of cases I can only pray and then go to my car and cry.
As many deaths as I have seen, as many sad conversations I’ve been a part of when treatment options have failed, nothing, and I mean NOTHING is worse than meeting a family in the ER or ICU as they stand around their loved one who has experienced a catastrophic event and they have no idea what to do next.
Here’s the scenario : Mom has had some low lying dementia that was pleasant enough and we’ve been working around her deficiencies. A woman of great dignity and all of a sudden she’s experienced a catastrophic stroke. Three adult children stand around her gurney in the ER without any idea of what to do next to help her, honor her, protect her.
OR Dad has had prostate cancer for many years and it has been well managed. All of a sudden symptoms are becoming very problematic and he’s been hospitalized three times in the last two months. Um…..
OR, heaven forbid- your spouse experiences a trauma and end of life questions have been thrust upon you sooner than you could’ve ever imagined. A future that seemed certain that very day has been wholly and permanently changed.
As scary as those scenarios sound, nothing is scarier than not knowing what to do next.
Let me back up because I want to make sure you are all still aware that the death rate remains at 100%. Young, old, easy, hard, none of us are getting out of here alive. These situations are relevant to each of us.
Scared? I don’t want you to be. I am here to help.
Collective deep breath. Let’s go back to the happy place.
The gift. The precious, unwrappable, free gift. Presents make us all feel better, right?
Because of my role at Weinstein Hospice I am also a privileged ambassador of a very special program called “The Conversation Project”. The Conversation Project is “a public engagement initiative that is both simple and transformative: to have every person’s wishes for end of life care expressed and respected.
Too many people die in a manner they would not choose and too many of their loved ones are left feeling guilty, bereaved, and uncertain.
The Conversation Project believes it is time to transform our culture so we shift from not talking about dying to absolutely talking about it. It is time to share the way we want to LIVE at the end of our lives. And it is time to communicate about the kind of care we want and don’t want for ourselves.
The belief is the place for this to begin is at the kitchen table or in the living room, not in the ICU or ED. We must talk with the people we love before we can’t and it is too late.
In my career, I’ve seen a lot of … ‘stuff’. As long as I have done this, I never cease to be amazed at the intimate moments I get to share with families at such a critical and sacred time in their lives. I could tell a lot of sad stories- stories I believe hospice made less sad, but still sad, nonetheless.
In end of life care, however, we dissect sad. For example there is no taking away the sad from losing a loved one. However, when a loved one dies, in peace, in a setting of their choosing, free from unwanted interventions, there is a BIG difference from the grief one might experience saying good bye in an ICU, pulling a tube, turning off machines and wondering if enough was done.
So what’s in my gift, you ask? The Conversation Project starter kit.
My gift is the gift you can give- AND GET- from your loved ones. As a sports fan I have always believed that championships are won in the off season. Similarly, productive end of life conversations occur when no body is sick and there seems to be nothing to worry about.
Friends, don’t be intimidated. The starter kit doesn’t ask you to be Doc McStuffins and understand a whole bunch of medical stuff and potential consequences. The packet asks soft but relevant questions like, “if you were at end of life, would you like to be home or in a facility?” “Who would you like to be there – or absolutely NOT be there?” “What are the things that would be most important to you in that time?”
This week, we said farewell to our 41st president, George H. W. Bush. I think most agree that his funeral and the tributes to him were absolutely spectacular. I personally ugly cried during his son’s eulogy because of how extraordinary his praise.
I think it captivated us all.
For me, in my work, I find the former president’s death and funeral a perfectly teachable moment in this way:
George Herbert Walker was very old and very debilitated. He led a grand life but was deeply mourning the loss of his spouse. He got to die at home, with friends, after saying goodbye and I love you to his son, without undignified heroics.
A glorious death. Well deserved.
Almost like – a gift.
I want to encourage each of you to give yourselves a gift- share a gift with your loved ones. One to be given and received.
Please pick up a Conversation Project starter kit after service today. (Shari Bayer from Jewish Home Life Communities will be a kiddush to distribute and answer any questions.) Look through it. Consider sitting down with your parents, your spouse, your children and discussing the questions it contains. I assure you this experience requires no medical or legal knowledge.
What it does require is an open mind. A loving heart. A desire to learn and to care. A commitment to doing the very best for the people you love at a critical time in order to preserve their legacy and soften your grief. The Conversation could be a fantastic replacement for the political arguments that might otherwise consume your family holiday get together.
I want to conclude with this thought: There is nothing that Apple or Amazon or anything money could buy that would be greater than the gift of telling and learning the sacred end of life wishes to and from your family and friends.
And I thank each of you for the gift of your time.
Jenny Buckley, RN, BSN, CHPN
Director, Palliative Care Services and Community Outreach
Jenny also writes a hospice blog at www.jenny-buckley.com